So when I say that he is 10-months old, you can see the surprise and question in their eyes. So the next question that naturally follows is, “Was he a preemie?” When I say no, then they’re really confused.

They’re wondering why he’s so little, why he doesn’t have the chubbiness of other babies, and why he doesn’t seem to like other 10-month old babies they know.

It’s frustrating and heart-breaking for me. God how I wish that he was just like every other baby. There’s not a day that doesn’t go by that I wonder why he can’t be like every other baby. Why does he have to suffer? Why can’t we be like every other family dragging their 3 healthy kids around, dealing with normal parenting issues? Why do we have to wonder how many days he has left with us?

It’s hard to believe that he’s going to be a year old on June 27th. His disease has delayed so many things that are normal for other babies.

He can’t crawl. Though he tries his hardest, pulling his legs up onto his knees and moving himself just far enough to grasp that toy out of reach.

He can’t pull himself up on furniture, toddling from one thing to the next.

He can’t pull himself up in his crib to greet me each morning. In fact, his crib is still at the highest level made for newborns.

He can’t get into a sitting position on his own.

He has trouble balancing himself when he sits in a shopping cart, so we always try to get the cart with the baby seat attached.

Because he lacks rapid eye movement, he can’t watch his brother and sister race by him just by moving his eyes back and forth quickly. He has to turn his entire head to see something. He can’t just look at me when he hears me talking to him, he has to turn his entire head and focus on me.

All the things he can’t do like other babies breaks my heart everyday. God, how I wish he could just be normal!

I try not to think of it, I try to just focus on all the things he can do. But it’s hard when you see the confusion on the faces of those who ask how old my baby is. Hard when you see other healthy babies, in all their chubby glory.

But Kyle can also:

Roll all over the floor from one place to another. He did this right on target for his age.

Laughs and smiles.

Respond to those who talk to him.

Play with toys in his exersaucer.

He can sit up on his own. Though I do have to sit with him because after awhile of sitting he’ll just throw himself back. And I think it’s because with his big tummy, the pressure of it pushing everything up into his lungs gets to be too much, so he throws himself back to relieve the pressure.

He can jump in his jolly jumper.

He can hold his own bottle.

He can eat baby food like strawberries, blueberries, cereal. And now he loves the Primo chicken and vegetable soup when I blend it up like baby food. He loves cheezies and baby cookies.

So I try to remember all the things he can do. He’s my sweet cherished angel, and I love him with all my heart and soul.

I pray that God doesn’t take him home too soon…